'I applaud the Down Syndrome Bill – but wider concerns remain'
Mary Langan, Haringey Severe and Complex Needs Reference Group
- Credit: PA
The alarming death rate of people with Down syndrome as a result of the Covid pandemic has drawn attention to the particular vulnerabilities associated with this condition.
I absolutely share the enthusiasm of many commentators for the Down Syndrome Bill, which passed its Third Reading in the House of Lords in April and is now due to receive Royal assent.
This legislation, introduced as a private member’s bill by Dr Liam Fox MP, places a duty on local authorities to assess and plan provision for the social care of the 40, 000 people living with Down syndrome in the UK.
Yet, as the mother of a young man with autism and severe learning disabilities, I also share some of the reservations expressed by charities representing the wider community of 1.5 million people with similar conditions. In Haringey, fewer than 200 people live with Down syndrome, whereas some 5,700 residents have a learning disability and a further 2,100 have autism.
Writing in Disability Today, one critic argues that the Down Syndrome Bill could be considered "exclusive and discriminatory" and that "by singling out people with Down's they would be given preferential treatment over other people with different diagnoses or learning needs". Another expresses the fear that the rising tide of investment "whilst floating the Down Syndrome boat, may simply sink the other boats around it".
The Autism Act of 2009 gave similar recognition to the needs of people with autism. But this legislation coincided with the wave of public sector austerity cuts and closures resulting from the financial crisis.
These cuts had a devastating impact in Haringey, with the closure of residential and daycare facilities and many in the local learning disability community are still struggling with the consequences.
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Unless resources are allocated to meet identified needs, there is a risk that measures of this sort become merely token gestures, "raising awareness" without delivering real progress.
Mary Langan is chair of Haringey Severe and Complex Needs Reference Group.